Boosting Engagement and Skill Acquisition through technology and personalization: A pilot trial of enhanced transdiagnostic behavioral therapy

Researchers at Rutgers University are conducting a research study to evaluate a 10-session telehealth-based group therapy program.

What are the goals of the study?

The purpose of this study is to evaluate the feasibility, acceptability and effectiveness of an adapted telehealth Group Behavioral Activation Therapy (GBAT+) for autistic adults. GBAT+ is intended to help adults manage stress, anxiety, low moods, and anger.

What will happen during the visit or online?

Eligible people will be asked to complete questionnaires, 5 individual assessment visits, and 10 group therapy sessions.

How will this help families?

Participants will receive 10 group therapy sessions and be compensated up to $230 for completion of assessments.

The current study is being conducted by Drs. Knutson, Viskupic, and Wiltse from South Dakota State University. This is a collaborative initiative to gain insight into various areas impacting the autism community. Dr. Knutson is a clinician having worked with autistic individuals and families for 15+ years. Drs. Viskupic and Wiltse are political scientists who examine attitudes and behaviors surrounding the COVID-19 pandemic. Key points to the study: Prevalence and impact of head-directed self-injurious behavior – Attitudes surrounding supportive equipment – Impact of COVID-19 on access to treatment and healthcare choices.

What are the goals of the study?

Our goal with this study is to gain critical information impacting families who have a loved one with autism. By gathering this information, we hope to improve individual safety, treatment options, treatment accessibility, and policy change supporting family needs.

What will happen during the visit or online?

Participating means completion of an online survey through QuestionPro. You may skip any questions you do not want to answer. We anticipate it will take about 10 minutes of your time.

How will this help families?

These data will assist us in supporting families and individuals impacted by autism, head-directed self-injury, the development of supportive equipment to better protect individuals and guide treatment, and to understand how the recent worldwide COVID-19 pandemic impacted this population to support policy/planning.

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

Recent recognition of the co-occurrence of autism and gender diversity has led researchers to investigate the unique experiences and mental health of individuals at this intersection. Past research has indicated that autistic, gender diverse individuals experience poorer mental health compared to those who are either a gender minority, autistic, or those who belong to neither of these groups. Given the correlation between parent and child health, and recent reports from parents regarding increased support needs at this intersection, it is important to address the health and unique needs of parents among this population. This cross-sectional, survey-based study aims to investigate parent-reported stress and mental health of parents whose adolescents are autistic and gender diverse, in comparison to those who belong to only one of these minority groups (gender diverse or autistic) or neither group. Additionally, the study will examine how parental perceived social support, as well as parent-reported autism characteristics and quality of life in their children, may be associated with parental stress and mental health in parents of autistic, gender diverse adolescents. The findings from this study will improve understanding of the mental health and stress of parents whose adolescents are autistic and/or gender diverse, along with what factors are associated with their well-being. These findings have the potential to inform future work testing supports addressing the needs of this sub-population.

What are the goals of the study?

The goal is to address gaps in the literature related to parents of autistic, gender diverse adolescents. I hope to learn about parental stress and mental health in groups that have not previously been thoroughly explored (parents of gender diverse adolescents and parents of autistic, gender diverse adolescents). I hope to identify factors associated with mental health and stress among these parents that can inform future research and practices.

What will happen during the visit or online?

Participants will fill out an online eligibility survey (aprox. 5 min long). If eligible, they will receive an email with a link to the online study survey. This is a 30-45 min survey in which participants answer questions related to themself and their adolescent. Upon completion of the survey, they will be emailed a $15 Amazon gift card.

How will this help families?

This project will contribute to our understanding of parent mental health and possible risk/protective factors among parents of adolescents in general and among specific at-risk populations. Understanding parent mental health and stress among families in these understudied subgroups can help drive future research around supports for families of gender diverse autistic youth, with the potential to improve quality of life of both parents and autistic adolescents.

We are excited to invite you to participate in our upcoming survey where you can win a $50 Amazon gift card for participating! At Hofstra’s Diagnostic and Research Institute for Autism Spectrum Disorders (ASD), we are committed to advancing knowledge and understanding in families parenting autistic children. The current study titled, “The Relationship Between Dyadic Coping and Couple Satisfaction for Parents with Autistic Children” utilizes a survey that takes approximately 10 minutes. Your input will contribute to the body of knowledge in autism research. Survey Link: https://tinyurl.com/hofstraasd

What are the goals of the study?

The goal of the current study is to further understand how parents with autism utilize coping mechanisms to overcome stress and achieve satisfaction within their relationships.

What will happen during the visit or online?

You will take a 10 minute survey.

How will this help families?

This may help in understanding the support systems in place for children with autism and contribute to the positive research surrounding autism and families that have autistic children.

Recent work suggests that mothers of children with disabilities are at increased risk for accelerated cognitive aging. Mothers of children with autism spectrum disorder (ASD), in particular, may be especially susceptible to atypical aging given their elevated rates of key risk factors for dementia relative to mothers of typically developing children or children with other neurodevelopmental disorders. A significant number of mothers of children with ASD (up to 65%) continue to be caregivers for their adult children, resulting in increased stress, depression, loneliness, reduced social support, and poor sleep, all of which are risk factors for dementia-related disease. This NIH-funded study conducted by Dr. Laura Friedman at the University of South Carolina aims to address gaps in the literature on cognitive decline in mothers of children with ASD and associated risk factors.

What are the goals of the study?

Findings from this study will provide insight into atypical cognitive aging among mothers of children with ASD as well as potential risk factors. This will shed light on the need to monitor aging in this group, which may have broader consequences on their children who continue to live at home and depend on their parents as caregivers after high school.

What will happen during the visit or online?

You will complete 1 hour of surveys about various topics related to your life, including your memory and mental health. Then you will complete a 2 hour interview via Zoom with a trained examiner who will ask you questions about your experiences. You will also complete measures of thinking skills and attention.

How will this help families?

This study will contribute to our understanding of the potential link between autism and dementia-related disease, and is an important step in identifying the need for and advocating for family-centered supports through the lifespan.

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training. The subjects will include students and trainees with learning and/or developmental disabilities in addition to neurotypical students. The training will be delivered in multiple forms: pre-recorded single viewer, prerecorded with additional participants, pre-scripted live one-on-one and/or pre-scripted live with additional participants. We aim to determine which training is least stressful and most engaging for students and if differences exist based on a specific disability with a focus on students with autism spectrum disorder.

What are the goals of the study?

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training.

What will happen during the visit or online?

The subjects will be fitted with a Shimmer Glove on their hand and will wear TobiiPro glasses for eye tracking or an eye tracking bar will be used. Each subject will be asked to submit a salivary sample before each training and directly after each training. They will be asked to complete 3 trainings over 4 visits. The Neurodivergent will attend an acclimation session in which no training is offered.

How will this help families?

This could help them learn which teaching method (in-person, prerecorded video or zoom) is best for their loved one. Which will help them to be stronger advocates.

Current literature fails to address the autistic perspective regarding prenatal and cancer genetic testing. Prenatal genetic testing includes carrier screening, cell-free DNA screening, and diagnostic genetic testing. These tests are recommended to be offered to all pregnant patients. Cancer genetic testing is used to determine if there is a hereditary risk for developing certain cancers. This testing is most frequently offered to those who have a family or personal history of cancer, as well as some who have been recently diagnosed with cancer. Given their strong negative feelings towards genetic testing for autism, autistic individuals may have a unique perspective about prenatal and cancer genetic testing. The more genetic counselors and medical providers are aware and sensitive to the autistic community’s perspectives, the better they can provide care for them.

What are the goals of the study?

I hope to understand the perspectives of the autistic adult on prenatal and cancer genetic testing.

What will happen during the visit or online?

The participants would need to complete the survey which takes about 15-20 minutes.

How will this help families?

This will help provide more perspective from the autism community on genetic testing and help medical providers give the best care.

Researchers at Seattle Children’s are looking for parents of 2 to 12 year old children with autism spectrum disorder to take part in an online survey study and an in-person EEG visit. We will use a variety of neuroscience, behavioral, and self-report techniques to first understand if there are unique emotional or behavioral considerations for families of children with neurodevelopmental disorders and challenging behaviors and if these characteristics influence participation in and completion of interventions.

What are the goals of the study?

This study is being done to learn more about parents’ emotion processes and problem-solving in families of children with neurodevelopmental disorders and behavior problems. For families who participate in this study, parents will complete several questionnaires and one lab-based visit to measure brainwaves with an EEG while completing some problem-solving or other tasks.

What will happen during the visit or online?

Parents will complete about 1 hour total of questionnaires (about themselves and their children) and 1.5 hours of an in-person visit. During the in-person visit, parents will complete 15 minutes of problem-solving activities and 1 hour of EEG (i.e., measurement of brainwaves while playing games).

How will this help families?

Findings will help us support families enrolled in interventions targeting challenging behaviors.

We are the TRANSCEND Research Team at Massachusetts General Hospital – thank you so much for your interest in our research! Our research is about how different areas in the brain are connected in autism compared to typically developing individuals, and is entirely non-invasive. We are currently recruiting individuals ages 14-32. The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. You can read more about our studies on our website: http://transcend.mgh.harvard.edu/ We reimburse for time at the rate of $30/hr for behavioral assessments, and $70/hr for MRI/MEG visits. We also reimburse for travel expenses such as Uber and Lyft costs (up to $80 per visit) and for parking. Note also that our visit times are flexible, and we will do our best to accommodate your schedule.

What are the goals of the study?

Our research group studies brain development and associated medical conditions in healthy adults and adults with developmental disorders such as autism, an autism spectrum disorder, language impairments, attention deficit disorders, or sensory processing disorders, including misophonia. Specifically, we are trying to understand how sensory information (sight, hearing, and touch) is processed in the brain of an individual with autism spectrum or other developmental disorders as compared to a healthy individual.

What will happen during the visit or online?

The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. If you self-identify as having misophonia, we will ask you to get a comprehensive audiology exam at the Mass Eye and Ear Audiology clinic affiliated with MGH, to rule out other potential auditory processing disorders.

How will this help families?

There is no direct benefit to the subject for participating in the research. We hope that the information gathered in our studies will aid in the identification, understanding, and treatment of autism.

RAYS, a Brown University research study, is aimed at studying the outcomes and development of autistic teens and young adults aged 12-24 as they navigate adolescence to early adulthood.

What are the goals of the study?

The goal of RAYS is to examine the challenges and problems that adolescents and young adults on the autism spectrum experience over the course of adolescence and young adulthood, especially their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 interviews over 3 years, each one year apart after the initial assessment. The study consists mainly of interviews and filling out questionnaires on mood, behavior, alcohol and other drug use, and relationships with family and friends. Teens/young adults can earn up to $395 for participating over the course of the study and parents/guardians can earn up to $225. All visits can be done remotely or in-person. The length of the visits vary by timepoint. Our baseline assessment generally takes 3-4 hours, T2 takes about one hour, T3 takes about 3 hours and T4 takes about one hour. All assessments can be broken up into multiple sessions if needed or completed in one sitting – we leave it up to the participant. If a participant is over 18 years old, their parent/guardian does not need to participate in order for the young adult to participate. If their parent/guardian would like to join the study at a later point, we will try to accommodate enrolling them. 

How will this help families?

This study can help researchers better understand the experiences of adolescents and young adults on the autism spectrum.

Parents of children with autism spectrum disorder (ASD) experience higher rates of anxiety, depression, and poor overall well-being, particularly when their child engages in challenging behavior, (e.g., aggression, self-injury, property destruction). Acceptance and commitment therapy (ACT), which encourages psychological flexibility and attending to the present moment, is an effective intervention for addressing well-being in parents of children with ASD when presented in various formats. Virtual group ACT can increase accessibility and improve social connectedness for parents. However, recent literature suggests that the time commitment may impact parents’ participation in interventions focused on their well-being. The current study will examine parents’ participation in and perceived acceptability of 6 hours of virtual ACT groups when administered in three different formats: a 6-hour workshop, three 2-hour sessions, and six 1-hour sessions. Participants will include 36 parents of children with ASD and co- occurring challenging behavior randomized across nine groups (i.e., three groups of four participants per format). All participants will attend a virtual intake interview, receive 6 hours of ACT group intervention, and participate in two virtual individualized parent training sessions to learn and practice behavioral intervention techniques when faced with treatment challenges. Primary outcomes of feasibility and acceptability include parent participation and acceptability ratings. Secondary outcomes include change in psychological flexibility and well-being after participating in ACT groups and procedural fidelity when implementing the behavioral intervention. Findings can inform future research examining virtual ACT groups for parents delivered in conjunction with their child’s behavioral services by exploring which format may lead to higher parental engagement in an intervention to improve their well-being, which can ultimately improve outcomes for both parents and children.

What are the goals of the study?

By directly assessing parents of children with ASD’s format preferences and perspectives on how parental support activities could increase engagement, we can better inform future iterations of the virtual ACT group intervention to best meet the needs of this population. Incorporating community voices into the development of interventions is associated with increased engagement and overall benefit; therefore, it is critical to assess the perspectives of parents of children with autism on components of parental support activities designed for them.

What will happen during the visit or online?

Participants will be asked to participate in a virtual intake interview (~1 hour), 6 hours of the virtual ACT group intervention, and 2 hours of virtual parent training to support parents in addressing their child’s challenging behavior. Participants will be asked to identify another adult to assist with the virtual parent training sessions.

How will this help families?

In addition to directly addressing parent participants’ well-being and providing parents with individualized behavioral intervention strategies, outcomes have significant practical implications for mediating positive treatment outcomes for children with autism and co-occurring challenging behavior. Given that children are part of a family system and are affected by the functioning of that system, it is critical to address the well-being of family members when attempting to improve outcomes for autistic children. Further, challenging behavior and parental stress often have a bi-directional relationship, such that increased parental stress can also increase the frequency and intensity of challenging behavior. Thus, even if the child’s challenging behavior is reduced in behavioral treatment, high parental stress may decrease the treatment’s effectiveness. Though parents of children with autism tend to have significantly higher stress levels than parents of typically developing children, few intervention programs for children with autism specifically address parental well- being. As such, outcomes of this study addressing parental well-being through a virtual group ACT intervention can increase practitioners’ knowledge of the importance of addressing parental well-being as part of a child’s behavioral treatment to improve outcomes for both the child and the overall family system.